I was also diagnosed in 2012 and has surgery in 2013. I continue on meds and have many health issues still. I haven’t had a full recovery and dramatic weight loss or anything. I’m now starting to regret surgery as it has left me very limited in what I can do. I was far more mobile before. I miss my life. I’ve lost everything since having surgery!

I, too, was diagnosed with a pituitary tumor and subsequently had surgery to remove it. I still struggle day to day with many issues…word finding, comprehension, emotions. I also struggle with finding Cushings disease support groups in our area.

A simple test that measures free cortisol levels in saliva at midnight — called a midnight salivary cortisol test — showed good diagnostic performance for Cushing’s syndrome among a Chinese population, according to a recent study. The test was better than the standard urine free cortisol levels and may be an alternative for people with end-stage kidney disea […]

Your case is every similar to mine. I wasn’t a dancer but I did play multiple sports in high school and played college basketball. I saw doctor Yuen at Swedish as well and many more doctors as well. I have never got my case or my symptoms solved. Over 4 years of doctors and testing. They found I had a pituitary tumor and mildly high cortisol in my 24 hour Ur […]

Thanks for sharing your story. In February it will be 6 years since I’ve had my pituitary surgery. My health is constantly up and down as well. I was just wondering if you’re treated for depression or anxiety at all? Also, have you found any exercises or physical therapy to be helpful?

Jill wrote: 'In December 2004 my dad who had addison's for over 30 years had a triple bypass surgery 6 days before Christmas. The surgery was an amazine success and it was predicted he would be home before Christmas. Day 2 following surgery the hospital neglected to give him his steriods for his Addison's for 22 hours, which they were complete […]

A man with Cushing’s disease — caused by an adrenocorticotrophic hormone (ACTH)-secreting pituitary adenoma — who later developed metastases in the central nervous system without Cushing’s recurrence, was successfully treated over eight years with radiation and chemotherapy, according to a case report.

Meta

Summary: Researchers conducted this study to determine the efficacy of stereotactic radiosurgery with CyberKnife for the treatment of recurrent pituitary adenoma. They concluded that stereotactic radiosurgery for recurrent/residual pituitary adenomas using CyberKnife appears to be relatively safe and effective when compared to conventional radiotherapy.

Methods:

Included in this retrospective study were patients who underwent cyberKnife radiosurgery for recurrent or residual pituitary adenoma at Barrow Neurological Institute (n=48).

Patients were followed for an average of 44 months.

Thirty-three patients had non-functioning adenomas, 10 had acromegaly, and 5 had Cushing’s disease.

Researchers analyzed the change in tumor size, hormonal function, and complication of therapy for each patient.

Results:

Tumor resection operation was performed through either the transsphenoidal or transcranial approach before CyberkKnife treatment.

All patients had either recurrence or residual mass in the cavernous sinus before CyberKnife treatment.

The total irradiation dose ranged from 2100-4000 cGy in an average of 3-5 fractions.

Slightly more than half of the patients (n=26, 54.2%) had smaller tumors at follow-up, while 22 (45.8%) had stable tumors.

Visual acuity remained unchanged post-treatment.

One patient developed radiation-induced temporal lobe necrosis.

Four patients (8.3%) required hormonal replacement due to panhypopituitarism.

Of the 15 patients with functioning adenoma, hormonal function improved in 12.

Summary: Researchers conducted this study to describe the different phenotypical characteristics of patients with armadillo repeat containing 5 (ARMC5) mutations, located in 16p11.2 and a likely tumor-suppressor gene. They determined that patients with bilateral adrenal enlargement, found on imaging tests, should be screened for ARMC5 mutations, which are associated with subclinical Cushing’s syndrome (CS) and primary hyperaldosteronism (PA).

Methods:

Researchers identified 20 patients with ARMC5 mutations (germline and/or somatic) who were enrolled in a National Institutes of Health (NIH) protocol.

They obtained sociodemographic, clinical, laboratory, and radiological data for all participants.

Results:

Three families (with a total of 8 patients) were identified with ARMC5 germline mutations; the rest of the patients (13/20) had sporadic mutations.

The male to female ratio was 1.2:1; mean age was 48 years and 60% of patients were African American.

Forty percent of patients were diagnosed with CS, 20% with subclinical CS, 30% with hyperaldosteronism, and 10% had no diagnosis.

Summary: The objective of this study was to describe the management and outcomes of patients with Cushing’s disease (CD) in the Vancouver region over a 30-year period and to investigate the predictive factors of CD recurrence. Researchers found CD recurrence in 45.8% of patients who received initial transsphenoidal surgery (TSS), and that a post-operative serum cortisol level > 140nmol/L may be a positive predictor of recurrence in these patients.

Methods:

Researchers retrospectively reviewed the clinical charts from endocrinologists in Vancouver who provided consent to participate in this study.

Included in this study were 48 patients diagnosed with CD since 1985.

Results:

All 48 patients received initial TSS; the mean follow-up time was 11.73 (±6.98) years.

More than half of the patients (n=26, 54.2%) remained in remission, and 22 patients (45.8%) received subsequent interventions due to CD recurrence.